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Innovation 'Elevator Pitch':
The Dementia Dekh Bhaal programme invests in South Asian carers of people with dementia. We do this by identifying, reaching out and empowering carers to normalise the conversations around dementia and become leaders in influencing change.
Overview of Innovation:
‘Dementia Dekh Bhaal’, meaning ‘to care for dementia’, was set up by tide - together in dementia everyday. Tide is a social movement led by carers for carers and campaigns to have better recognition and support for carers, enabling them to have a voice to speak up and influence change. This Project Outcome Report evaluates the success of Dementia Dekh Bhaal in its delivery as commissioned by the Heywood Middleton and Rochdale Clinical Commissioning Group (HMR CCG) and Rochdale Borough Council (RBC).

In 2015 the Life Story Network was commissioned by the CCG and RBC to review their dementia offer. The report ‘Strategic Review of Local Dementia Support’ was submitted in March 2016 and included a section on the needs of BAME communities, with a recommendation that commissioners should:

Invest in the development of a sustainable programme of work with the local BME communities to identify BME Community Champions to establish a coordinated model of education, advice, help and support for their local communities, building on the good practice from Liverpool and Bradford. It is particularly important to ensure that you engage and develop local community champions’.

In 2018 the CCG and the Council commissioned the Dementia Dekh Bhaal project to address the needs of South Asian carers. Specifically, the three strategic aims of the project were:

1. Develop and deliver a training package for professionals to understand more about the approaches to take for BAME people with dementia and their carers to provide more culturally competent care.

2. Campaign to increase awareness within the community, general public and public-sector staff around BAME dementia including a suite of material to support local carers in campaigning work and provide them with the knowledge, skills and confidence to do this with impact.

3. the power of stories to change perceptions including the creation of a suite of videos capturing the experiences of people with dementia and their carers.
Stage of Development:
Market ready and adopted - Fully proven, commercially deployable, market ready and already adopted in some areas (in a different region or sector)
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Innovation 'Elevator Pitch':
Tide is a social movement led by carers of people with dementia to have a voice in society.  Tide identifies and develops carers of people with dementia to support long term co-production and involvement with a range of health care providers.
Overview of Innovation:
Together In Dementia Everyday is a social movement led by carers of people with dementia. Tide enables carers and former carers to have a powerful collective voice, using their lived experience to raise awareness of their unique needs, have their rights respected and be empowered to influence policy, practice and research at all levels. Tide works with partners to ensure carers have a say and supports co-production at local, regional and national levels.

The Tide development programe creates trained and confident carers for health and social care to draw on as experts by experience to participate in local/regional planning forums and service reviews and to contribute to joint training. Carers can advise on and participate in research in health and social care, ensuring that the systems measure what really matters.

We have recruited and developed large co-horts of carers in the North of England who support a range of co-production activities with our healthcare partners.  Recently carers were invited to have a say in Westminister on the All Party Parlimentary Group on Dementia.

Getting involved also enables carers to influence change and shape their local communities by influencing how services are designed and delivered. Having a voice, understanding the system and being able to influence it improves carers’ well-being, enabling them to be strong advocates and care for longer

A person-centred approach must include involving carers as equal partners from the beginning; they know the person with dementia better than anyone else. Using their lived experience to inform policy and practice helps to improve services, ensures better outcomes for people with dementia, improves continuity of care, reduces carer breakdown and helps staff support people better. Carers represent 42% of the dementia care workforce so are key resources in achieving the shift from hospital to community.  Tide works with partners to give carers a meaningful say on service provision.

We would like to extend Tide into the Midlands - recruiting and developing carers of people with dementia and supporting them to have meaningful input into healthcare decisions at every level.

Examples of how carers have used Tide to have a say in other areas of the UK can be found here.

The Tide evaluation can also be found here.

By working with Tide we can enable more carers of people with dementia to have a seat at the decision making table and create a lasting partnership with skilled committed family carers.
Stage of Development:
Market ready and adopted - Fully proven, commercially deployable, market ready and already adopted in some areas (in a different region or sector)
WMAHSN priorities and themes addressed: 
Mental Health: recovery, crisis and prevention / Long term conditions: a whole system, person-centred approach / Wellness and prevention of illness / Education, training and future workforce / Person centred care
Benefit to NHS:
Carers of people with dementia have a unique experience of caring. This includes coping with the unpredictable nature of the condition and the emotional and psychological impact of grieving for the person they have known as a result of the cognitive decline of the person they are caring for;
 
Carers want to have their own voice and not be seen solely as adjuncts to those they are caring for. They should be recognised as experts by experience and helped to gain the knowledge, skills and confidence to influence and advocate for positive system change
 
There are 700,000 carers of people with dementia across the UK, with many feeling socially isolated and lonely as a result of their caring roles;
They make up the largest workforce (44%) in dementia, saving the care economy £11.6bn a year, but this is not recognised, valued nor respected by policy makers, professionals nor society as a whole;
 
Our Carer Development Programme will create a cohort of trained and confident carers for health and social care to draw on as experts by experience to participate in local/regional planning forums and service reviews and to contribute to joint training. Carers can advise on and participate in research in health and social care, ensuring that systems measure what really matters.
 
Giving carers a voice, improving their knowledge, skills and confidence and creating opportunities to get involved will help them lead healthy and independent lives. Research has clearly shown the adverse impact of caring on the health of those looking after people with dementia. Getting involved also enables carers to influence change and shape their local communities by influencing how services are designed and delivered. Having a voice, understanding the system and being able to influence it improve carers’ well-being, enabling them to be strong advocates and care for longer
 
A person-centred approach must include involving carers as equal partners from the beginning; they know the person with dementia better than anyone else. Using their lived experience to inform policy and practice helps to improve services, ensures better outcomes for people with dementia, improves continuity of care, reduces carer breakdown and helps staff support people better.
 
 
Initial Review Rating
3.80 (3 ratings)
Benefit to WM population:
The UK has a growing and ageing population, with increasing numbers of dementia diagnoses, there are 850,000 people estimated to be living with dementia in the UK, this number is set to rise to one million in 2025. Additionally, one in five people will experience depression sometime in their life and the prevalence of delirium in people on medical wards in hospital is about 20% to 30% and can be much higher in intensive care units.

If you live with dementia, depression or delirium it can sometimes be really difficult to express what is important to you and why. The NHS recognises that it is incredibly important that people living with the 3Ds receive person centred, and individualised care, particularly as these can offer incorporated protected characteristics. 
 
 
Carers don’t apply for the job. In learning from scratch, they develop a wealth of knowledge and expertise about the person they care for. Not all carers are comfortable in the role. Tide helps carers articulate this and helps professionals providing care and support to understand this too.

Our Carers Development Programme increases carers’ confidence, knowledge and skills, validates their expertise and enables them to speak up to influence change. Modules include ‘Maze Runner’ – helping carers to find their way through the health and social care system, policy and legislation and to understand their rights. Tide helps carers channel their anger and frustration into constructive action so that they feel that they are making a contribution and are valued by society.

“I am treated with dignity and respect…my voice is heard and listened to”

Working in partnership with people and building on their strengths and abilities require more than conversations with professionals through individual consultations. We need to harness carers’ collective voices to talk to and influence the system, policies and processes.

Tide connects carers together in a network, helping reduce isolation, giving them assurance that they are not alone and providing opportunities to get involved at whatever level suits them; this can be through an e-mail consultation, a letter to their MP, speaking at events, research or local, regional and national planning/advisory groups.
Current and planned activity: 
We currently operate in Northern England, Wales, Scotland and Northern Ireland and have over 600 members.

We propose working to recruit 50 carers of people with dementia in the West Midlands, providing them with 10 training and development modules and supporting them to have 100 opportuntities to influence.  This ranges from involvement on stakeholder groups, supporting CCG recruitment, co-producing projects, speaking at events, co-developing training and supporting reasearch.

We will then work with carers and partners to evaluate their input and to build long term connections so the voice of carers can be a resource that supports co-production in the long term.  Through the process we look to build stronger links between carers and the organisations involved to support robust co-production.

We know carers want to get involved with co-production and we would like to work with organisations in the West Midlands to give carers a worthwhile say on service provision.
What is the intellectual property status of your innovation?:
It belongs to Life Story Network CIC
Return on Investment (£ Value): 
medium
Return on Investment (Timescale): 
0-6 mon
Ease of scalability: 
Simple
Regional Scalability:
We have recently scaled effectively into West Yorkshire and North Wales with an increasingly growing cohort of active carers.
Measures:
As an organisation we look to create positive changes in the below outcomes and will work to measure and evaluate our progress against these.  We have in place a theory of change and are able to demonstrate progress against validated metrics.  In addition to these outcomes we look to ensure quality standards which ensure safety, efficiency and strongly positive beneficiary experiences.

The key changes we look to bring about are:
  1. Carers of people with dementia report increased connectedness to others, a greater sense of self-efficacy and feeling part of a collective voice.
  2. Current and former carers will gain confidence, knowledge and new skills that will increase their ability to influence positive changes in policy, commissioning and services.
  3. Development of policies, research, education, commissioning and services will be more responsive to carers’ needs by the inclusion of the voice of carers through the tide network at local, regional national and international levels.
The key indicators we measure against these outcomes are:
  • Improved connectedness scores (quantitative)
  • Improved self-efficacy scores (quantitative)
  • Carers report feeling part of tide network and having a sense of being connected to their peers
  • Increased confidence to challenge system leaders, professionals and decisions about themselves
  • Carers gaining new skills and improving existing skills; carers improving their existing knowledge of the health and social care system and acquiring new knowledge
  • Carers report feeling more confident to challenge the system, improved knowledge of the health and social care system and new skills developed as part of being involved in tide
  • System leaders report an increased receptiveness to and respect for the lived experiences of carers, and an increased understanding of the relevance of involving carers
  • HEIs and research partners report a better understanding of carers’ contribution to research and recognise carers as experts by experience
Adoption target:
We look to recruit over 200 carers in 2 years and train and develop them into an active movement which can support the NHS in its decision making and activities in the area.
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Innovation 'Elevator Pitch':
Meeting Centres are a local community driven, evidence based resource for people with dementia and family carers. enabling people and families affected by dementia to build resilience for the longer-term.
 
Overview of Innovation:
Meeting Centres were first developed in the Netherlands 25 years ago. Currently, there are 150 Dutch centres with a national network that local groups can utilise. There is good evidence both from Dutch research and recent UK research (www.meetingdem.eu) that people attending Meeting Centres experience better self-esteem, greater feelings of happiness and sense of belonging than those who don’t attend.  Recently completed translational research to implement Meeting Centres in the UK, Italy and Poland led to two successful Meeting Centre demonstrator sites being set up in the West Midlands: Leominster in Herefordshire and Droitwich Spa in Worcestershire. A new grant from National Lottery provides the opportunity to support new Meeting Centres and we are looking for people to set up new Meeting Centres.
 
The Dutch have a well-developed community process for developing new Meeting Centres that engages all local stakeholders in both the local development and longer-term implementation thus promoting local community engagement across health, social care and community groups.
At the heart of each Meeting Centre is a social club where people meet to have fun, talk to others and get help that focusses on what they need. A team of staff and volunteers trained in the Meeting Centre ethos provide an enjoyable and flexible programme for both the person with dementia and their family carers. The social clubs meet 3 days per week for 15 to 20 members per day.  Family carers get assistance with practical and emotional issues, as well as being able to contribute to social club activities. This can all help reduce social isolation and build resilience.

All activities are designed to help people adapt to the challenges that living with dementia can bring. This involves a chance to get together socially, to be creative, to get active and to share lunch. Everyone brings their skills and talents to the Meeting Centre and the programme is driven by what people want to do. People attend as little or as often as they need.

A diagnosis of dementia is a huge challenge to come to terms with. If people make good emotional, social and practical adjustment to dementia following diagnosis, then it is likely that they will experience fewer distressing symptoms later and will be able to live at home for longer with a better quality of life for them and their families.
 
Stage of Development:
Market ready and adopted - Fully proven, commercially deployable, market ready and already adopted in some areas (in a different region or sector)
WMAHSN priorities and themes addressed: 
Long term conditions: a whole system, person-centred approach / Innovation and adoption / Person centred care
Benefit to NHS:
Dementia is a key priority for both NHS England and the Government. In February 2015 the Prime Minister launched his Challenge on Dementia 2020, which set out to build on the achievements of the Prime Minister’s Challenge on Dementia 2012-2015. There are four key aspiration and this is the where Meeting Centres fill the gap ‘Every person diagnosed with dementia having meaningful care following their diagnosis.’ In terms of the West Midlands
 
In the Dutch studies and the MeetingDem project (www.meetingdem.eu) it was found that those who attended most regularly showed fewer of the more distressing symptoms of dementia and a greater feeling of support. Family carers also experience less burden and feel better able to cope. People with dementia and carers report high levels of satisfaction with the programme, seeing it as an important way of keeping active and feeling supported. In the Dutch studies it was found that attending Meeting Centres can extend the length of time before admission to care homes.
Initial Review Rating
4.20 (2 ratings)
Benefit to WM population:
There are over 73,000 people living with dementia in the West Midlands (https://www.uhb.nhs.uk/dementia-facts-and-figures.htm ).  Dementia is a priority under a number of the West Midlands STP areas including Herefordshire and Worcestershire  which states that, ‘Our strategy focuses on people and patients so that every person with dementia, their carers and families have access to and receive compassionate care and support not only before diagnosis but after diagnosis and through to end of life.’  So far over 250 people affected by dementia have benefitted from attending Droitwich Spa and Leominster Meeting Centres. The cross-community information meetings, initiative and advisory groups as well as linkage with dementia friendly communities has raised the profile the profile of dementia in the communities and as a result reduced stigma. Aside from Droitwich Spa and Leominster there is a Meeting Centre in Ross on Wye (Herefordshire) and a great deal of interest from across the West Midlands, including Birmingham, Redditch, Worcester and Hereford. This will mean that the benefit to the WM population will increase in the future – see below.
Current and planned activity: 
The Association for Dementia Studies (ADS) at the University of Worcester has been awarded a National Lottery grant from the Big Lottery Fund - The UK Meeting Centre Support Programme. The project will run from 1st Sept 2018 to 31st August 2021. The aim is to help establish new Meeting Centres in different parts of the UK to work with their communities to support people and families directly affected by dementia.  In addition there will be further evaluation of the Droitwich Spa and Leominster demonstrator sites and the development of a toolkit for other Meeting Centres to self-evaluate in terms of benefits and cost-effectiveness. 
If you would like to set up a Meeting Centre we can support you with  this.
You can find out more by visiting
https://www.worcester.ac.uk/discover/uk-meeting-centres-support-programme.html  and https://www.worc.ac.uk/discover/meetingdem-jpnd.html  or emailing meetingcentres@worc.ac.uk  or reading the flyers attached below.
 
What is the intellectual property status of your innovation?:
The Meeting Centre concept has been develope by Professor Rose-Marie Droes at the  VUmc, Amsterdam see www.meetingdem.eu 
Return on Investment (£ Value): 
N/A
Return on Investment (Timescale): 
N/A
Ease of scalability: 
4
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Innovation 'Elevator Pitch':
A co-produced blended learning resource with free PDF available.  Developed by people with dementia and carers to increase peoples ability to identify dementia, depression and delirium and feel confident in reacting to these conditions.
Overview of Innovation:
What did you wish you knew about dementia at the point of diagnosis that you now know?

This is what we asked people with dementia, their carers and the professionals that work with them.

We took what people told us they wished they knew, broke it into bite-size easy to read pieces and created our free learning resource: Knowing Me!


Knowing Me! Is a free online booklet to enable people to better identify and react to the three D’s – Dementia, Depression and Delirium which are all closely linked. https://www.lifestorynetwork.org.uk/pages/15-knowing-me  This booklet was co-created by people with dementia and their carers with consideration to what they wish they knew from day one of diagnosis. 
 
This free online learning has been downloaded by people with dementia, carers and professionals that want to have a useful resource to dip into.

Because of its popularity and feedback we have developed a blended learning approach which includes face to face training, online training and printed resources.

This approach to training is becoming popular with health care teams in Northern England who want to be more than just 'dementia friends' but seek to understand the disability and better support those they work with.
Stage of Development:
Close to market - Prototype near completion and final form may require additional validation/evaluation and all CE marking and regulatory requirements are in place
WMAHSN priorities and themes addressed: 
Mental Health: recovery, crisis and prevention / Long term conditions: a whole system, person-centred approach / Patient and medicines safety / Person centred care
Benefit to NHS:
Staff quickly identify the differences between, dementia, depression and delirium and can react appropriately ensuring the person gets the right care at the right time.
Initial Review Rating
2.60 (2 ratings)
Benefit to WM population:
Many health care staff still don't feel confident in dealing with dementia and the issues surrounding it such as memory loss, end of life planning, wellbeing issues and dealing with delerium.

Many staff are having increasing interations with those affected by dementia and want more depth of understanding than being just 'dementia friends'.

This blended learning approach, co-produced by people with dementia enables staff to dig deeper into dementia, not only being better able to spot the symptoms and challenges but being empowered to know how to react to them.

Many people with dementia and their carers live in misery as the depression or delirium is an assumed part of dementia that cannot be treated.  We know this can be treated and this resource enables staff to identify and react to the issues that face a person with dementia.

This blended learning can easily be rolled out across the West Midlands for staff at all levels who have interactions with those effected by dementia.  The training is fun, fast paced and applicable to their role.  They will be able to take away key learnings to implement in their practice improving outcomes for patients and improving satisfaction levels for all involved.

The staff that have recieved this training have said it has empowered them and given them renewed confidence when supporting people with dementia.
 
Current and planned activity: 
We look to disseminate this free online resource to ensure its uptake by NHS staff at all levels.  This booklet was co-produced by people with dementia and their carers and enables staff to have a strong understanding around dementia, depression and delirium.
 
Along with this we look to roll out face to face training to accompany this resource
What is the intellectual property status of your innovation?:
This is held by Life Story Network
Return on Investment (£ Value): 
medium
Return on Investment (Timescale): 
6-12 mon
Ease of scalability: 
Simple
Regional Scalability:
Life Story Network have experienced and dedicated staff in place who are able to travel to deliver quality training across the region.
Measures:
Increased number of staff able to identify:
Dementia
Depression
Delirium

Increased number of staff feeling confident knowing how to react to:
Dementia
Depression
Delirium 

The key outcome is patients recieve better and faster support for their needs through improved staff awareness.
Adoption target:
For this piece of work we are looking to train over 225 staff in the region.
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